Big Day for Infusions

Yesterday was a pretty big day for me as far as my UC goes!! I had my first infusion at home. I can't believe it. I would have never dreamed that one day I would sit on my couch with an IV dripping meds for my UC. I have come a long way since I started getting infusions!! Here is a little bit of my infusion history. I have had iron infusions for years, but my first infusion med for UC was remicade. I believe it was 2014 when I started those. I was soooo sick, and honestly I would have agreed to anything! I had been in the hospital and had actually begged the colorectal surgeon to just take out my colon. I was sick and in so much pain!!! The doctor told me about remicade and I said sign me up. I actually had to sign papers agreeing to it. They went over some basic info and some of the risk which were pretty scary. Honestly, I didn't want to hear any of it. I just wanted to get it started. I didn't even want to know what the internet had to say. I knew better!! I was in a crisis at that point and I just needed help. My fellow IBD friends will know just what I am talking about.

The remicade infusions were done in the short stay clinic at Conway Regional. I had compassionate, professional nurses taking care of me there. My dad and a couple of close friends would take me. Like I said, I was so sick so getting there was an ordeal. I was also an emotional wreck. It was so hard to be a mom and wife and also deal with the pain and sickness that I was having. Poor Toby!! Many times I was (or at least felt) helpless and I would tell him that I just wanted to die. He handled it well. He was always encouraging and would tell me over and over that I would get better and it would be okay. So, with that being said you can imagine the emotional wreck I was and how scared I was. Having someone there with me during the infusions was comforting, plus I needed someone to drive me home. It was about a 3 hours infusion process and I would get benedryl, so I was pretty out of it. My iron was low also, so that added to the exhaustion I already felt. Those who sat with me and gave words of encouragement have no idea what that meant to me. They were such a blessing!!!

I am not sure how many infusions I had gone to, but I finally got to a point where I decided I didn't need someone with me and I would drive myself. I told Toby that I was going to put on my big girl panties and take myself. Well, that didn't work as planned. LOL!! I was headed to drop my two older girls off at school on my way to Conway Regional when one of my girls who was 8 or 9 at the time asked, "do all mommas have to go do what you are doing today?". I seriously could not get to the school fast enough to get them dropped off so the tears could flow. My vehicle might have turned on two wheels into the school drop off line. I cried like a baby all the way to the hospital and through part of my infusion. It broke my heart that my girls had to see me so sick and needy. Diseases are not just hard on the person suffering from it, but also so hard on those around them. My girls have seen and learned so much from this chapter of life, but that's another story for another time. I did make it through it by myself just fine, but unfortunately over time Remicade didn't work for me.

Now fast forward to Entyvio. I have been getting Entyvio infusions at UAMS since 2016. I think I wrote about that in an earlier post. Insurance has decided that they do not want to pay for me to have infusions in a hospital setting. Eight weeks ago I went to the new facility for my initial visit, but from now on I will be getting them at home. It was so convenient and easy. No driving, no traffic, no parking deck, no walking in the cold wind up to the building, no waiting in the waiting room while my meds were mixed and no public restrooms. I miss my nurses at UAMS, but I now have a great nurse coming to the house. She is very good and made the new experience go very smoothly.

I hope one day I will be able to discontinue IV infusions, but until then I will be thankful for modern medicine and technology and especially for how far I have come since I started my infusions for UC. To God be all the glory for all the blessings on my journey!!

If you are suffering from an irritable bowel disease and you are facing infusions in your future please know you are not alone. Be strong and brave. Good things can come from this. You can meet new people and build relationships with complete strangers. You will realize how strong you really are; and most of all, it might be just what you need to help you to the next level of health. Never give up! Keep fighting!!